Shocking new statistics out today show that there are still 2,295 [1] adults and children with a learning disability or autism locked away in inpatient units.

This is around 600 [2] more than the target set by Government in 2015 to move between 35- 50% of people with a learning disability and/or autism out of institutions into community-based support by March 2019.    

Mencap warns that today’s data is further evidence that the current system is still failing and that there is not enough of the right support in the community being provided. As a result, people with a learning disability continue to be admitted to inpatient units and people are not able to be moved back home, near to loved ones. Mencap says that it is simply unacceptable.   

NHS England’s recent announcement that it will extend the deadline for closing inpatient beds by 5 years, is further cause for concern around the lack of urgency given to the issue, says the charity.   

The figures show that in February of this year 2,295 people were still living in institutions, which is around 600 more people than the minimum target for reduction, set by Government. The number of children in these units has more than doubled since 2015, increasing to 250. Disturbingly, the number of reported incidents of restrictive interventions e.g. physical restraint, for one month, is over 2,505, 820 of which are against children [3].   

Despite small decreases month on month since 2011, Mencap warns that it is "nigh on impossible" that targets will have been met this month ahead of Government’s deadline in just a few weeks. Mencap is calling on the Government to remove the red tape and funding barriers that are preventing so many people from returning home. It wants Government to prioritise social care reform and demand that NHS providers and Local Authorities work together to reunite families and develop and provide suitable care for people with a learning disability in their communities.     

Dan Scorer, Head of Policy at Mencap, says:

“Eight years on from the Winterbourne View scandal, where the public were made aware of the shocking abuses happening in an inpatient unit, it is clear that the Government has failed to deliver on its promise to ‘Transform Care’. Thousands of vulnerable people are being detained in institutions, often hundreds of miles away from their families, subject to physical restraint, overmedication and being kept in isolation. Their families are powerless to get them out. This is a domestic human rights scandal. We want to see them back home in their communities, living fulfilling lives with proper support. NHS England acknowledged its failures when it pushed back its deadline to 2023/24. We need to know urgently what the Government will do differently, having failed over the last eight years to release people unfairly kept in institutions.”  

For Isabelle Garnett, mother of Matthew, aged 18, who has autism and a learning disability, this news will come as no surprise:

“Matthew spent 15 months under section, during which time, his mental and physical health deteriorated catastrophically, and we became more and more concerned about his safety and wellbeing. Matthew thought he was in prison, and to us, it felt like he was being punished for being autistic. Rather than his behaviours being seen as a communication of what he might not be coping with, or struggling to understand, Matthew was over-medicated, secluded and restrained. It took many months of fighting for our son, to get him out of a secure mental health hospital. We know we’re the lucky ones, being able to get him out, there are so many people we know still fighting to get their loved ones out after years and years.”     

Mencap is increasingly concerned that new generations who need support and services locally, are instead being sent to inpatient units. In many cases it costs the same or less to support someone in the community rather than keep them in an inpatient unit [4], but the money needed to set up local support and services is not being made available. With Local Authority social care budgets so stretched, there is a perverse financial incentive for people to remain trapped in units which are paid for by the NHS. There needs to be a pipeline of good quality community support, housing and professionals with the right expertise and capacity to support people with a learning disability and their families at an early stage to help prevent needs escalating and getting to crisis point.  

Dan continues:

“It is outrageous that such large amounts of money are being spent sending people away to services that fail them and in many cases damage people rather than help.  All too often, these extremely expensive units, some run by the NHS and others by the private healthcare sector, are simply being used as ‘dumping grounds’ by commissioners looking for an easy ‘solution’ at any cost. As a result, people can be sent many miles away from home and then left there for many years. Money is being spent on the wrong type of care. This needs to shift from inpatient units to health and social care services in the community. Report after report has said what must be done but the Government has failed to tackle the blocks to progress, allowing this scandal to continue before our eyes. We need to hear now, what the Government is going to do differently.”   

The charity is calling on Government to shift its ‘shortsighted’ focus from simply closing down existing inpatient beds, without the right community support in place, and instead implement a national programme across departments, beyond just Health, to put long term and effective solutions in place to meet the needs of people with a learning disability and learn from failures to date.

-ENDS-   

For further information or to arrange interviews, contact the Mencap press office:  

 Notes to Editors  

[1] The Assuming Transformation data from NHS Digital (https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/provisional-statistics-at-february-2019-mhsds-december-2018-final), is the most accurate and up to date account of people with a learning disability and autism in institutions. It is a record of how many are in an institution, how long they have been in for, when their care and treatment is checked and what kind of unit they are in.  

 [2] Building the Rights Support, 2015 Pg 6, para 1.9 - meeting the 35% target would equate to 1,700 people   https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf  Transforming Care Programme targets were initially set in 2012 with a deadline for delivery of June 2014. When these targets were not met, a new deadline of March 2019 was established.  

[3] Figures for restrictive practices quoted from NHS Digital MHSDS Data: December 2018, published March 2019.   

[4] The average weekly cost of inpatient care for an individual is around £3,500. According to NAO, in 2012-13 NHS spent £557m on people with a learning disability in mental health hospitals.  

Following the Winterbourne View scandal, the Government formally recognised that these ‘hospitals’ are not homes and that most people with a learning disability should never need to go into an inpatient unit; they should be able to get the support they need in their local community. It committed to a programme of work - the Transforming Care Programme - aimed at supporting people to move out of units and back to their local communities, with the right support and services available to them in their local areas. The NHS and local authorities were given a deadline of 1st June 2014 to make this happen. This target was missed and March 2019 was set as the new deadline to meet this objective. In January 2019 NHS England moved the deadline to 2023/2024.   

In NHS Digital Assuring Transformation data up to January (published in February 2019), the number of children and adults in ATUs was 2,305. The average length of stay was 5.4 years. 

Mencap is asking the Government to focus on:   

  • Developing local expertise, support and services  
  • Ensuring there is joint oversight and ownership of the national programme by the Ministers from  the Department of Health and Social Care, Department of Housing, Communities and Local Government and Department for Education.  
  • Removing the red tape and funding barriers that are preventing so many people from returning home.   

Figures for March 2019 are due to be reported on 18 April 2019.   

Independent Evaluation of Building the Right Support: short summary of the main recommendations from the research done so far, published in October 2018. Research led by the University of Birmingham, BILD, The Strategy Unit and ICF: www.strategyunit.co.uk/publications/building-right-support. The findings support our concerns.  

About Mencap   

There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want. www.mencap.org.uk     

What is a learning disability?  

A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life. Learning disability is NOT a mental illness or a learning difficulty, such as dyslexia. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’. People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks  

People who may need assessment and support  

Individuals sometimes experience crisis situations that may require specialist intervention. At these times, what is needed is a good assessment of the cause of the problem, followed by a treatment plan to address those issues and access to good support that is close to home. It should rarely be necessary to admit a person to an assessment and treatment unit (ATU).   

When it is necessary (for instance, when someone may have a complex mental health condition), it should be to a small unit that is close to their home. The facility should be able to provide specialist assessment and treatment, and enable the person to return to their local community as soon as possible.  

Many people are admitted to assessment and treatment units (ATUs), and then detained under a section of the Mental Health Act 1983 (MHA). This is sometimes referred to as ‘being sectioned’ or ‘sectioning’. While this may sometimes be necessary, there are concerns that detention under the MHA is being used too frequently, often in circumstances where it is perceived as the last option, where local services have broken down and there is no other alternative. Too many people are being sent away to assessment and treatment units and other institutional settings that are too large and too far from home. Often, people with a learning disability end up in these places unnecessarily, because the right option for them is not available locally or because local services do not possess the skills to understand the cause of their behaviour.